Sunday, February 22, 2009

Only write in pencil when you are dealing with the cancer

I know it's been way too long since I updated, and I promised details on my chemo plan......I even have a draft saved that I was writing, I swear I was following thru! But before I could finish it and post it a curve ball was thrown my way - that might have changed everything. In hindsite, I see how incredibly flipped out I was about it - as much as I tried to stay calm, and march thru it like a good little cancer inflicted soldier.

When I met my new, wonderful breast surgeon, Dr. Euhus for the first time on Monday 2/9 I believe I mentioned how thorough he was, how much time he spent with us. I had had all of my medical/surgical records sent to him, and I brought with me my films from my original mammo/sono on 12/31 and the report that went with them. The next day, Tuesday morning, my cell rang and the voice on the phone was Dr. Euhus himself, which was a big disconcerting - as my Baylor docs rarely - make that never - called me themselves, always they had some underling nurse or assistant called me. Dr. Euhus said he had spent time reading all of my information, and had an issue. In the report on my original 12/31 imaging, the radiologist made note of 3 things, my tumor (now removed) the lymph node - which everyone has discussed is NBD - just a intra-breast lymph node - and a 3rd possible, small mass. There is no image of this 2nd mass - do I know anything about it?

Remembering quite clearly both of my unpleasant experiences at the Baylor Breast Imaging Center, my awful encounters with Dr. DeLeon, Baylor radiologist - I recounted this to him: A technician did my mammogram, verified the lump, then took me into the unltrasound room. She did along ultrasound, saying she thinks she sees 3 things, then goes to get the doctor. Dr. DeLeon comes in and does an even longer (nervewracking) ultrasound. He checks out my lump, then says the 2nd thing is a lymph node - then has to explain to me about the intra-breast lymph nodes that most people don't know exists - says it's NBD. Then he hunts around for the 3rd thing, asking the technician "where?" they confer, he searches - then says out loud "I really think that's a shadow". And that's it, no one EVER mentions a 3rd thing to me again. I come back and see Dr. DeLeon for the nightmare biopsy that turns out to be a failure. I have my initial consultation with Dr. Grant - my original surgeon, where we talk about my lump, the lymph node (he's not concerned with it either) what the surgery will entail. Then there's my surgery where the lump is removed, and pathology confirms he has gotten the "clean margins", meaning he got the cancer OUT, also the axillary dissection where he got 24 lymph nodes out - only one proven cancerous. Finally my post surgical appt with Dr. Grant - where he removed the drain and said I was to move on to an Oncologist for further treatment - SURGERY OVER.

Dr. Euhus says - well, the radiologist noted the 3rd mass in his report, but we have no pictures of it and it wasn't noted in your surgery and didn't show up in the pathology of your surgical excision......So my worry is, is there another small mass in your breast that hasn't been addressed? In an instance such as this - it's better to be safe.........So I'd like to do a breast MRI to make sure. I'm like, sure, of course, but SURELY it's nothing. SURELY if there was something else there one of them would have been damn sure to remove it during my surgery???? SO I'M REALLY NOT GOING TO WORRY. But schedule the test, you can add it to the other 50 tests I'm taking, absolutely. I tried to shove that to the back of my mind, as I went on that week to have a full body bone scan, CT, met Dr. Harker-Murray the oncologist and made my decision to move all of my care permanently to UT. Thinking back, I believe the fact of having it come out that there was yet ANOTHER problem with my care at Baylor, that mention of a 2nd mass in the report that was never addressed to me - certainly weighed in on my decision to go to UT, along with the exemplary care I felt I was now receiving from everyone there. Monday - Presidents day, to go along with the holiday theme of my breast cancer - I had the breast MRI & a heart scan. I hadn't had a breast MRI before, and it's quite the process. You lie face dawn on the bed-thing that moves into the machine, it has boob holes that they hang thru, and an IV is inserted in your arm. As a side note: the breast MRI technician at UT is Rita Clemons - and she's the sweetest, gentlest, friendly person. Anyhoo - she explains that when she moves me into the machine, she will then get it all calibrated and start taking pictures, then she will re-enter the room, turn on the IV for contrast, and do a 2nd set of pictures. It will take over 45 minutes and I cannot move even a smidge - or the whole thing starts over again. She went to great pains to make me comfy, getting me settled in using pads on my arms so they weren't straining during the long test, making sure I had no breathing obstruction with my nose area having a slat face down to breathe thru, covering me in a warm blanky. But with my herniated discs in my neck, and let's face it - even with the ear plugs it's very LOUD, by the time it was finally over my neck was screaming, I was dizzy and nauseated - just blech, def. the most uncomfortable test I had done. But it was over! I could move on.

Tuesday morning rolls around, I'm finishing up my blog post on the chemo, and chatting on the phone with my fellow cancer patient neighbor - when my cell rings, caller ID saying it's from UT. I tell my friend to hang on while I answer the other phone, thinking it's prolly someone confirming my genetic test scheduled for that today, but it's Dr. Euhus, himself' again....uh, oh. He's been reviewing my MRI films with the radiologist, and there's something THERE. It's next to the excision site, it could easily be scar tissue from the surgery, but it's about at the spot that Dr. DeLeon had noted the 2nd little mass, so that's concerning. Concerning, God I've learned to hate that word. He really feels he'd once again rather be safe he'd like me to come in for an ultrasound biopsy. ASAP. Just in case the ultrasound doesn't show it well enough, he'll book the MRI at the same time, and if they don't feel "comfortable" enough with the ultrasound guided biopsy, they'll do an MRI guided biopsy. I cannot imagine how THAT would work, but it sounds awfully unpleasant - but whatever! Of course I want it checked out, I'll do whatever he wants! He of course apologizes profusely that I have to go thru this - like it's his fault! My friend is on the other phone in my lap and hears the whole thing. She is devasted for me - and says I need anti-anxiety meds STAT, NOW. She's told me this before, remember she is several months ahead of me in treatment, she's said there always comes a point where you get to the end of your rope.....I've felt I was doing quite well so far, but this makes me feel like I'm just dying a little inside. Now my mind can race along imagining another cancer, another surgery, another infection, delaying chemo for another healing time, maybe we find a new and different kind of cancer? I am SICK with dread. And angry, anger is a feeling I can run with. I call the Baylor imaging center and ask for the person in charge. I tell her my story, full of outrage - does she understand that because of their error I am going thru this NOW? Yes, yes she does and she's going to investigate it and get back to me. Still riding the wave of anger, I dig thru my notes and find Dr. DeLeon's cell number. Back when my biopsy failed, and he knew how upset I was - he gave me his cell number so that I could call him back "anytime" with any more questions I had. I called him and he answered. He was not at work that day, he had the day off, but he listened to my story, recalled my case, asked me lots of questions, profusely apologized, and promised to call me the next morning when he got to work and could pull my file.

And he did, the next morning at 8:30am he called me. He said the 2nd mass was "questionable", and it was near enough to the primary tumor, that he thought it would automatically removed when the surgery was done. Had he talked to my surgeon prior to my surgery - you know, to make sure the 2nd mass was addressed? No, he did not talk to him, but that was "normal", he said he did his job by putting it in the report, that the surgeon would "of course" be reading before my surgery. He says he "stands by that", he is positive that if my tumor was removed with clean margins that the area he questions HAD to have been removed! He's profoundly sorry this is happening, he's glad that I've moved to UT since I had so very many problems with my care at Baylor, he feels I have done right by myself to find a place where I'm comfortable....blah blah blah. He asks if I would please stay in touch, please let him know what happens. He's such an earnest little shit on the phone, so yeah, sure - I'll call ya.

I forgot to mention, that on Tuesday after I got the call from Dr. Euhus, I had to race to UT to meet with the genetisist - about genetic testing for the BRACA gene. I was still a bit of a wreck as she took me to her office, I told her about what was happening, the 2nd mass, the MRI, the biopsy I was facing. As seems to be the rule around UT, she was amazingly sweet, understanding and compassionate. After I told my story and cried a bit, she launched in to her explanation of what the gene they were looking for was, what it meant, she asked lots o questions about my genetic heritage - which is full of mostly holes, not information. Both my grandmothers died young, my mom's mom in 1928 when my mom was 2, my dad's mom in around 1942 when he was 16. And I really don't know what killed them - the rest of my relatives are men - for 5 generations, nothing but boys. Here's a tidbit of info: in the general population 1 in 500 women has the gene, in the jewish population it's 1 in 40! I'm not jewish in any way - but in listing the many things I might be made of, one of them is a bit of cajun french. AHHA! Did I know all the Louisianna french are decended from jews? 100 families imigrated from France to Montreal, the Montreal to Louisianna - they were 100 jewish family's. Many that stayed around New Orleans turned Catholic, if they scattered to the country or Texas or Mississippi, they tended toward Southern Baptist - that would be us. Almost every one of the women in those 100 families had the BRACA gene. The gene gives you about a 50% of getting breast AND ovarian cancer. And that's forever - say I have the gene, and I've just had this breast cancer. I will continue to have a 50% chance of getting breast or ovarian cancer again and again - as long as I have breast tissue or ovarian tissue. So the recommendation if you have the gene is double mastectomy & full hystorectomy. Holy shit! And my triple negative tumor is the type of tumor women with the gene usually get. Of course! She really doubts I have the gene, but suggests I get the test anyway. So I do, they shipped my blood off that day - 2/17 - I should have the results in about 2 weeks. So on this day I have begun the wait for this genetic test, and my biopsy 2 days later, and then of course the wait for the results of THAT.

Let me add, that this week my son has been sick constantly - it started Sunday and it's lingered on and on. He's having an episode of his cyclic vomiting syndrome, and he hasn't had one that lasted this long in many years. His teachers, advisors, tutors are all - why do you think it is? Is he worried about school? You? His girlfriend problems? WHAT CAN WE DO??? I tell you, I'm getting it from all sides........ And he keeps throwing up, not keeping food down.

Thursday, the day of my biopsy starts. We begin the day with the boy feeling like crap, but dragging himself off to school. We have his annual ARD meeting that morning at 10am - he has special ed designation because of his illness, giving him extra time to make up assignments when he's sick & misses school, access to extra help from an advisor (his other mother) etc. This is also when we try and decide on his schedule for the next year, balancing his incredible smarts with not overloading him and stressing him out. This year I feel distracted and unprepared for this meeting (we've been having them for 7 years, so it's nothing new). He shows up at the meeting very sick, one look at him and you know. And he get's a bit emotional at the meeting, which almost breaks me. In my head I'm saying over and over "hold it together, hold it together...." Overall the meeting is fine, productive, and when it's over we bring him home - he's too sick to stay at school. And now we're running late - we race to UT to make my biopsy.

Because of my previous, horrible experience with a breast biopsy at Baylor, I'm booked to have todays biopsy with UT's head of radiology, Dr. Phil Evan's. I'm brought into the ultrasound room, and see a 3 screen computer monitor - on all 3 screens are an image of a breast - my breast - and like a little bright planet shines a little......something, small lump? My heart drops to my feet. The kindly nurse - Tootie, I shit you not - is bustling about, having me lie down, positioning me lying down takes my cape off my left side, then covers my nakedness with a drape - doesn't notice my shakiness while staring at the site of those computer screens. She leaves promising Dr. Evans will be there soon. I'm lying there thinking - I'm not going to meet another doctor for the 1st time while lying naked and prone. I sit up, cover myself up and wait. Dr. Evan's arrives and I'm able to stand and shake his hand, he seems like a gentle, soft spoken man. I ask him if he knows my story, hes says yes but asks me to go over it a bit with him. He reads my chart, I get back into position and he starts ultrasounding me. In the spot where the mystery mass should be. He says it all looks normal to him, there's scar tissue. He goes over the to 3 screen images of my MRI and starts scrolling thru them - he says nope, don't see a mass, just scar tissue. Then I see THE CAVE. There is a cavern in my breast! It's bigger than a golf ball and it's empty! He says no, it's full of fluid and that's normal. I'm telling you - it's bizarre. And big! He declares the surgical site inside me looks good, and there is no mass - but he comes back and continues ultrasounding. He gets to the bottom of my breast (the cave is at the top) and goes over and over one area. He says there is a change in tissue there, it looks like normal, fibrous change, if I wasn't who I was, there for what I'm there for, he would never give it a 2nd thought - but because I have my history and I'm there for a biopsy, he's going to biopsy this area of changed tissue at the bottom of my breast, ok? Well yeah, can't ignore it now - can we? They get out all the needles and stuff, inject a bunch of lidocaine, I feel the pressue of the push and then YEOW! The biopsy needle clicks when it fires and takes out a little bit of tissue inside and I FEEL IT. He's mortified, says I'm sorry! Your breasts are indeed very dense, I'm putting a lot more lidocaine in, you won't feel the next one! Too late! I've started melting down. He's going as fast as he can, and I don't "feel" the next 4 or 5 times the thing clicks, but it doesn't matter, because I've officially lost it. When he's done I manage to blubber out "now that you've done that, are you MORE suspicious?" He says adamently NO! I still think it's nothing! He felt awful, you could see it - but I couldnt stop myself, I'd lost control. He says he's so sorry it'll take two business days to get the results, which means over the weekend, I'll have to wait until Monday. I assure him I'm used to waiting over the weekend, it's always over a weekend. He pulls a little notepad out of his pocket and asks me for my cell number, which I give him. He tells Tootie that I need to see Dr. Euhus's nurse now, it's obvious he means for my hysteria - I need to be medicated! But instead Tootie takes me to the waiting room door and opens it - about a dozen seemingly happy, calm women sit in it wearing robes, waiting for thier tests. She says I must wait in there, I have to have a post biopsy mammogram. Is she kidding? I cannot stop crying, the women all look at me - they look a bit mortified - I head for one of the little dressing stalls with curtains, pull the curtain shut and just cry - I cannot stop. A few minutes later the curtain opens and this young woman is there "I just want to give you a hug! Can I hug you?" I yelp "NO! THANK YOU BUT NO!" Seriously, I'm living a nightmare here. Someone luckily calls my name and I'm taken into the mammo room. I'm able to hold my breath long enough for this women to get a few shots. It's over! But no, she tells me to go back to the waiting room and wait for the doctor to review the film, to see if she needs more shots. She leads me into the waiting room then disappears - I head to the dressing room where my clothes are, dress faster than you would think possible, and race the hell out of there. When I get to the big waiting area I shout for the hub - while pounding on the elevator button. He takes one look at me - What the hell?? I just say over and over, I have to get out of here. now. now. It's fine - we just have to leave! In the car I'm just a hot mess, I explain that I've just gone over the edge, I can't stop, take me to a hotel, I can't go home where the boy is! He needs to call UT and tell them we're gone, I'm sure they're looking for me.....He refuses to take me to a hotel, luckily at home the sick boy is asleep, he puts me in bed - we call UT, the head nurse says how fast can your husband get to the pharmacy? Quickly it turns out, and soon I'm on anti anxiety meds, the adrenalin of my first every panic/anxiety attack abates - and I sleep for a few hours. I now have huge respect for those folks out there living with an anxiety or panic disorder. It was truly a nightmare experience, I cannot imagine living with that on a regular basis. It's almost unthinkable, but I'm learning you can live with a lot more than you think you can.

The next day is Friday, I'm ok enough that morning to work, I stay busy all day, succeed in not thinking about all my pending test results quite a few times this day. Once again, I'm on the phone with a friend in the afternoon when I get another call - from a UT phone exchange. I knew, before I took the call I just knew it was Dr. Evans. I click over and say hello, and he says - very quickly, "Ms. Moore? This is Dr. Evans and I have great news! It was totally benign, I have all the results right here and it's totally nothing!" That sweet, sweet man had jumped thru hoops and gotten me those results in barely 24 hours because he knew how much it meant to me - what hell I would go thru over this weekend. And the minute he had them he called me - himself - to give me the good news. I never got results from Baylor in less than 5 days - and they never called me first, I always had to call them, and I never received results from a doctor - only nurses that could read the results, but not answer a question beyond that. Amazingly wonderful, once again, UT is for me.

So back to my original intent. I'm scheduled to start chemo on March 6 - a Friday. It seems pretty certain we're a go now, lord knows we've searched my boobs thoroughly, and they appear cancer free. I still owe you a detailed report of the plan, which I swear I will do soon. Today I'm happy, another crisis behind me. The boy has been well since Friday night, he's gotten to spend time with his favorite cousin - he's happy and doing his makeup work. We're breathing a little easier, all of us. The hub has gotten to indulge in his workaholic-ism this weekend as well. Our new normal is taking shape.

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